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Health literacy can be a matter of life or death

The basic ability to read is essential in looking after one’s health, especially when managing a chronic illness that requires various treatments and medications. It is estimated that patients with low health literacy cost anywhere from US$106 billion to US$238 billion each year in the US alone, which equates to roughly 10% of the healthcare budget. In the UK, it’s estimated that the financial cost of low health literacy is 3% to 5% of the yearly NHS budget.

Health literacy is defined as the degree to which a person has the capacity to obtain, process and comprehend health information in order to make decisions about their own health. Around 75% of health information is written at a high school to undergraduate reading level.

This presents serious problems – take the US for example, where the average reading ability of adults is between grade 8 and 9, with around a quarter of adults reading at a grade 5 level and below. In England, the current research shows that approximately 43% to 61% of English working age adults regularly experience problems understanding health information.

As a result, most healthcare information is written at a level more advanced than the reader’s ability. Imagine the anxiety caused by not understanding what your doctor has said, or by being puzzled by your prescription, all with the knowledge that your health is at stake. Or if you’re a parent and making the health decisions for your child, that you could end up making a mistake that puts them at risk.

Hospitals and other healthcare facilities can be stressful, daunting places. They’re often very busy with a distracting amount of information that all demand your attention. The health literacy standards of these environments are often mismatched with the health literacy levels of the patients using them, especially when it comes to signage. A problem faced by participants in one study was that the clinic they were looking for was given three distinct names: one in their appointment letter, one in the hospital directory and a different one again in the signposts.

When navigating a healthcare facility, a patient is expected to be able to read and understand a wide range of written information, from appointment letters to complex consent and medical history forms to information pamphlets and maps. Many patients are unable to make sense of these sources of information, leading to late or missed appointments, dissatisfaction with the facility and, in the worst case, a decision to end their treatment.

The problem of jargon

We all come across jargon in the workplace, probably on a daily basis. Yet the use of jargon by doctors and other medical staff can be troubling. It’s easy for doctors to forget that most of their patients don’t have the same education, training and years of experience that they do, and that the complex terms they’re familiar with might sound like a foreign language to others. A patient being told that they have “renal adenoma” or “a benign kidney tumor” can be misunderstood, causing them pointless worry. A less extreme example would be using “hypertension” in the place of “high blood pressure” when the latter is more commonly understood.

Patients with low levels of health literacy are more likely to make mistakes with their medication and often misread the instructions. Instructions such as “take two pills twice a day” can be misread, with research showing that fewer mistakes were made if phrased “take two pills with breakfast and two pills with dinner”. Most research in this area found that around half of patients were recorded as misunderstanding their medication’s purpose, the frequency taken, or the specific dosage instructions involved. Errors with medication can be very dangerous for patients, even life threatening in some cases.

The concept of health literacy was first introduced in the 1970s, so it’s still a fairly new field of research, but it has been gaining traction in recent years. It’s hoped that future research will highlight this as a significant area of concern, instigating the changes necessary to accommodate those with low health literacy.

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